WHS and Seizures Relationship Status; It's Complicated

One of the distressing facts about care-giving for Phia, living with a deletion of some genes and having a duplication of others, is that you can't predict any moment in time.
Phia started having recurrent seizures or epilepsy at age three.

 Looking back, she had her first seizure (that I know of, due to witnessing it myself) at six weeks old.  It was very short and I didn't see this activity again until she was 1 year old. It was similar to what she did at 6 weeks old  but when I asked her Dr's they called it an episode due to her underdeveloped central nervous system. She then had a small seizure in her high chair at age 2.
 I was baffled.
  It seemed these "episodes" happened when she was tired or sick. So we tried our hardest to keep her rested and well.
I didn't mention her episodes again to Phia's Dr's until age three when we needed to call 911.
We had just finished a Christmas photo shoot. Phia was dealing with a mild cold, I had given her a cold medicine and within a hour of the picture taking she had convulsed for about two minutes and lost consciousness.
This time the Dr's called her "episode" a seizure.
  We hoped it wouldn't happen again and we figured the cold medicine was not a good fit for her well being.
 By age four her brain seemed to develop a rut and each time she was sick or with fever, seizures became more evident and attacked longer and also began happening when completely well.
After a six minute seizure we were on our way to adding another Dr. to Phia's medical file, a neurologist. He determined  Phia was having febrile, complex partial and tonic-clonic seizures. What wasn't determined was why, no history of epilepsy in either side of our family's.
 Her Neurologist suggested trying a seizure medicine to help control or stop her new rut of seizures after having an EEG and seeing epileptic activity. Her unexplained developmental delays and now seizures of more dramatic activity had us assessing the risks and benefits of putting her a anticonvulsant.
Heart wrenching to say the least. 
We chose the med.
She continued to have seizures but less dramatic. The continued break through seizures meant increasing her medication.
Within two months of her 7th B-day, she had reached her maximum dose and we had received her microarray test results. She was living with Wolf-Hirschhorn Syndrome all these years and we didn't know it but it explained why she was having seizures.
She was missing her LETM1 gene, linked to seizures in children living with WHS.
We were off to Denver's Children's Hospital in February to assess her new diagnosis and another EEG to evaluate a change in her medication. We found she had been taking a med that was not compatible for seizure control in people living with WHS. 
Trileptal, (oxcarbazepine).

This is quoted from my post two years ago...

"The following day the news of the EEG was discussed with us. Sophia had changed significantly from her last EEG, (two years ago.)  My heart started to race.
 Bracing myself for the news that will change our lives, once again.
Remembering the Psalm I had just read the night before, "He will have no fear of bad news; his heart is steadfast, trusting in the Lord."
The Dr reports... No epileptic activity was recorded. She had no spikes of seizure activity ~ at all.  A clear EEG....really, are you sure, check again.
Then came the news that she could taper off her seizure medication. A turn on the road that came so unexpectedly. When you don't expect good news it really becomes even greater news! This was completely refreshing .
We thought maybe a med change but to be rid of them altogether?  Amazing. The report from her appointments remained outstanding.  Good news after great news. Choking up, as I write, on the goodness God has provided this little girl. He has held her when I couldn't and still is, thankful.
 He is her Sustainer."

Her relationship status with Wolf-Hirschhorn Syndrome and seizures; it's complicated.
It's unpredictable.
It's living moment by moment trusting God, who is still on the throne (as my previous Pastor would say) a promise that brings me great comfort!
The best case scenario, she may outgrow seizures and remain seizure free the rest of her life.  Or she may have a respite and then they reoccur due to anything that would lower her seizure threshold, she may go back on an anticonvulsant.
The worst case scenario, she may have her next seizure and die or if not the next one the one after that or eventually.
As I write these words I also realize, He is my Sustainer too. 

We are celebrating two years seizure and med free!

~Isaiah 46:4
"I am he, I am he who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you."